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New here- Split Spinal Cord Malformation, Scoliosis, Spinal Stenosis and Vertebrae Abnormalities

JBQJJBQ Posts: 1
edited 12/22/2015 - 8:52 PM in New Member Introductions
Hi Everyone!

I'm 25 and was born with a split spinal cord malformation. Basically my spinal cord split into two spinal cords at the T8 level and the cord came back together around the T12 level where it proceeded to tether itself to my spine. Due to the neuro-orthopedic effects of this I ended up with severe scoliosis for which I was operated on and now have moderate scoliosis and rods in my back. I have what I believe is relatively mild stenosis but that last neurologist I saw said it puts me at increased risk for paralysis. I also have some vertebrae that are misshapen and some bulging of disks. Total I have had 7 surgeries (3 on my back, 1 on both legs at the same time and one on each foot). I have pretty bad foot deformities and I get frequent headaches and nerve issues which the doctors attribute to the surgeries and the fact that everything in my spine is rubbing against things and the muscles and nerves just don't work right. I fall quite a lot as my balance is poor. My back doesn't stop hurting although if I am careful it is manageable. I have developed some pretty bad neck pain the last few years and trying to type for long periods of time is hard as my arms start going numb!

I am in the somewhat awkward position of being 25 and having people intrusively ask what I am planning to do for a career. Currently I receive SSDI and have had a very hard time holding down jobs. Can't stand very long, can't carry much, needs frequent breaks from sitting, can't type for long, sometimes is non-functional because of pain-leaves out a lot of career paths unless I want to medicate myself into oblivion! I have been prescribed Norco and muscle relaxers for several years but I develope a tolerance to them pretty quickly. I can get a few weeks of relief from pain before I need to stop taking the meds and give my body a break so they can work again. Definitely not where I pictured my mid 20s but I have a wonderfully supportive life partner who is currently studying to be an elementary school teacher and I have just started volunteering as a crisis counselor. We raise a bunch of chickens who think they are dogs and have two dogs who think they are people.


  • LizLiz Posts: 7,832

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    Liz -Spine-health Moderator

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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